Sunday, October 19, 2008

Cerebral Hemodynamic Changes During Intensive Care of Preterm Infants

Interesting article in the October 17th issue of Pediatrics.

I only have access to the abstract and I never know what I can reproduce legally so here is a snippet of the article...

OBJECTIVES. The objectives of this study were to examine the circulatory changes experienced by the immature systemic and cerebral circulations during routine events in the critical care of preterm infants and to identify clinical factors that are associated with greater hemodynamic-oxygenation changes during these events.

CONCLUSIONS. Routine caregiving procedures in critically ill preterm infants are associated with major circulatory fluctuations that are clinically underappreciated and underdetected by current bedside monitoring. Our data underscore the importance of continuous cerebral hemodynamic monitoring in critically ill preterm infants.


terri w/2 said...

I guess my first response was "so". .you're going to "monitor" for cerebral hemodynamic changes. . and then what?

Once those cerebral hemodynamic changes are detected and damage occurs - what are you, the neonatologist going to do about that? Assist the family with a lifetime of caregiving that is going to accompany these findings?


My second thought was - "it's about time". .that it is acknowledged that routine neonatal care can cause our kids some serious long term issues.

That is why as an RN, I could never be a neonatal nurse. A friend who is a teacher once said - when *I* make a mistake, it can be erased - when a mistake (or as this article implies - routine cares) occurs in neonatal, it wipes out IQ points.

Anonymous said...

Helen Harrison here:

Yes, neonatal care is inherently damaging, and MRI studies show the vast majority of VLBW preemies have significant brain damage by the time they leave the NICU.

My solution? Tell expectant parents this (and more about the dangers of routine preterm delivery and care) before they get to the DR. Then give parents meaningful options about delivery and resuscitation.

This whole business of resuscitating and waiting to see if there is major brain bleed is so misleading.

Sheila said...

I think the thing which is the MOST distressing to me about studies like this (and I don't mind adding to the complete picture of study) - is that we KNOW from several well constructed and replicated studies that there is discrete, cellular damage that is occuring in the population EVEN WHEN there is NO NICU history of cerebral accidents of any kind - so IF, even under "optimum" circumstances, preemie brains are different than their term peers - what true relevance does observing what happens when the conditions are LESS than optimum.

14 years of preemie-l and 12 years of preemie-child have given us a sea of substantial, varied anecdotal evidence so that anyone with half a brain or an iota of observational skills can see that in the majority of cases, preemies carry life long impacts of their lost gestation. While there ARE kids who do well, graduate from high school and college - create meaningful lives for themselves, there parents can describe the ways that that represented enormous triumph. Many more parents, sit in dark living rooms wondering what "tomorrow" will be like for these representatives of a vast experiment they didn't really know they were being unwitting participants. I cannot even begin to wrap my mind around the educational crisis that is emerging from NICU policies over the past 20 years. I honestly do not know how these kids and their families will be able to navigate an ever narrowing river of necessary resources.

Ack .. sorry for the book.


Nancy said...

I have a question. We know the the majority of babies born in the 23-29 week range, and some beyond that, have life long issues that impact them in far more ways than we ever imagined. For those babies that do happen to come away with minimal (unnoticeable) to no damage, are there any studies done on what was different in their NICU course from the other babies to warrant such extreme differences?

I think about this a lot. What was done so differently in Caitlyn's situation that could be replicated in order to prevent some of these things from happening? Or is it nothing that was done differently and just luck of the draw? What occurred during my pregnancy or her course of treatment that could have possibly resulted in such a dramatic difference between her and the other 25 weekers that I see?

I'm truly asking, I'm not trying to start a war here. Just that for some reason I have been thinking so much about this. Maybe because there are currently no less than 14 pregnant women taking maternity leave in my district between November and February.....crazy isn't that?!?!?!

Anonymous said...

To Nancy:

How old is Caitlyn now?

A lot of the problems only become really apparent at adolescence and adulthood.

What was the "cause" of her preterm delivery, and how long was she on a ventilator?


Nancy said...

Caitlyn is 7. Her delivery was due to HELLP, she was only in distress towards the end of the pregnancy, probably the last hour or so. and I use distress loosely. Her heart rate never dropped, though it was very static. Which I later learned was not a good thing.

She was on the vent on 2 occasions. The first immediately after birth for 8 days and the 2nd when she was a little over 2 weeks old. That time she was only on for just under 2 weeks.

Honestly, I don't know what could creep up in adolescence or adulthood at this point that could be blamed on her prematurity. and I don't say that with ignorance. I say that with the firm belief that while there may be studies that have tied some ailments to prematurity, they also occur "naturally" in full term births.

ThePreemie Experiment said...

Nancy wrote: "I think about this a lot. What was done so differently in Caitlyn's situation that could be replicated in order to prevent some of these things from happening? Or is it nothing that was done differently and just luck of the draw? What occurred during my pregnancy or her course of treatment that could have possibly resulted in such a dramatic difference between her and the other 25 weekers that I see?"

Hi Nancy,

I have often wondered that with Paige also. She was on the vent less than 24 hours and had a fairly uneventful NICU stay. What was done differently that caused her to do so well in the NICU?

But on the flip side, I also wonder what causes the mental health issues in preemies. She is not alone in her issues-they just aren't as talked about. Although Paige's issues were there when she was younger, they did not become the most apparent until she was a bit older.

Caitlyn may or may not have issues when she is older. The statistics never show that 100% of the kids are affected 100% of the time. I wish there was a way to figure out the reasoning behind the success of some.

ThePreemie Experiment said...

Terri, as I was reading the abstract I had some of the same thoughts as you did.

Sheila wrote: "what true relevance does observing what happens when the conditions are LESS than optimum. "

What I am hoping that will be done with the research is that parents will be told the truth, instead of being mislead that their baby will survive the NICU unscathed.

I know, I know. It may be wishful thinking but the more that studies that come out showing that there is proof of the damage, docs won't be able to ignore it.

ThePreemie Experiment said...

Helen wrote: "My solution? Tell expectant parents this (and more about the dangers of routine preterm delivery and care) before they get to the DR. Then give parents meaningful options about delivery and resuscitation."

Hi Helen,

This is exactly how I feel. Docs need to be telling parents about the findings. They need to include this in their discussion with parents-the fact that not only is prematurity going to affect their child but care in the NICU will too.

And, including information, like this, in the "Congratulations on your pregnancy" packet that you get at your first OB appointment would be the first step. We get handed all kinds of information on Downs Syndrome and other possible adverse outcomes, why not about prematurity and the options?

Nancy said...

"The statistics never show that 100% of the kids are affected 100% of the time. I wish there was a way to figure out the reasoning behind the success of some."

See that's the thing that bothers me. There are resources spent on determining the long term damage caused by NICU treatments. And we know there are many. Why aren't some of those resources also spent on figuring out why some of these kids aren't suffering from the same long term effects? Unless of course, that is just a pipe dream and there really is no way to determine the differences. Or the differences aren't something that is done medically, but intrinsic??

I have really been struggling with this lately. Like I said before, maybe it's because of all the pregnant women at work who are due soon who are now telling me that they just want it to be over. And when I tell them they need to just hang on, they look at me like I am a lunatic of course LOL. But I think part of it is that there is this perception that is formed about Caitlyn once people know her birth history. And often times it isn't a positive one. I think another part of it is that I have been struggling personally with some issues of faith and wondering why in the world all of these afflictions that other babies her gestation have that never happened to her. It's all the "whys" that are bothering me these days!

Sheila said...

Dear Stacy,
I hope it didn't sound like I was saying studies like this one are pointless - they aren't ... but if the MD's don't even acknowledge the studies to date which describe the ways in which prematurity in and of itself cause clinical permanent differences in preemie brains - I just don't see them warmly welcoming studies which say "oh and by the way ... here's how our current treatment modalities are making the situation worse" ... but then, my friend you know I'm just a bitter old hag anyway :-)


Anonymous said...

To Nancy, from Helen Harrison:

There are recent studies on all this. I'll quote chapter and verse here again (it's all been cited in past posts on this blog) when time permits. I'm just back from our daughter's wonderful wedding in NY, and still trying to unpack and readjust to real life.

At any rate, the research indicates that the effects of brain damage/abnormality in preemies (about 100% in preemies born below 26 weeks)either causes psychiatric problems to worsen or first become apparent in adolescence. Term-born control groups are used in these studies so it is almost certainly prematurity-related brain abnormalities that cause the problems.

Other studies have shown a decrease in IQ between ages 8 and 15, and a very large decrease in the percentage of children considered to be normal (this among VLBW preemies).

From a personal perspective, our son's CP was not diagnosed officially until he was 8. His autism and retardation was not diagnosed (officially) until he was in his late teens. I know from the other preemie lists that this is a common phenomenon.

If Caitlyn is looking good at this point, I would say count your blessings -- her later problems, if any, should be relatively mild. But it may be "premature" to suggest she has no lasting effects from her birth and neonatal course. For so many of us, the other shoe drops in a big way later on.


Kate K. said...

Regarding Stacy's comment:

"Docs need to be telling parents about the findings. They need to include this in their discussion with parents-the fact that not only is prematurity going to affect their child but care in the NICU will too.

And, including information, like this, in the 'Congratulations on your pregnancy' packet that you get at your first OB appointment would be the first step. We get handed all kinds of information on Downs Syndrome and other possible adverse outcomes, why not about prematurity and the options?"

I agree 100% on this suggestion. The first appointment is a good time for women to receive the information about prematurity. Although doctors need to realistic with parents when they find out that their children will be premature, when you are in the ER and about to have an emergency c-section is hardly the optimal time to be weighing all the pros/cons. Hopefully, some understanding will occur before that point. That doesn't mean that a parent must make decisions right after the first OB appointment, but being exposed to possibilities is important.

My friend (Ivy league educated) is pregnant. Just talked with her the other day. She is at 33-weeks. Started having some minor contractions. Doctors told her to go home on bed rest. But they'd didn't really explain what they meant by bed rest. She was under the impression that it meant "take it easy" and "give yourself a little vacation." So she showed up at work. She told my former boss (her current boss) about the bed rest. Boss laid into her and told her to get home and follow doctor's orders. Boss said it wasn't something to screw around with and really let her have it. My friend had the mistaken impression that it wasn't a big deal if baby comes early. After all, she's made it much farther than I did with my son (25-weeker). I tried to set her straight on that note.

My point is that she is a highly educated, smart person and yet she truly doesn't get the prematurity problem. Prematurity isn't an OK thing. Babies are supposed to stay in womb until 38 weeks. Period. And her OB obviously wasn't communicating the seriousness of bed rest.

I read a newspaper article a couple months ago that basically said that a lot of OBs don't think that delivering after 34 weeks is a big deal. And a lot of children are having lung problems even as 34-weekers b/c they are ushered out of NICUs rather quickly.

So how do we start an information campaign about the many long-term effects and dangers of prematurity when otherwise smart women and a lot of OBs aren't absorbing the seriousness of the issue?

Kyrsten said...

Joshua, my surviving twin/28 weeker, is 23 months and showing little or no signs of repercussions from his early birth (VLBW [2 lbs., 9 oz. or ~960 ], true vent for 48 hours, C-PAP for 62 days).

"Waiting for the other shoe to drop" is how I try not to spend my days-- but it's sure on my mind, especially after reading some of these stats!

I am so proactive in every other aspect of our lives-- there are no words for how frustrating it is to not have "anything" preventative to do.

It's been said again and again here --and is *so* true-- that parents are still not being told risks in the first place.

I've become a self-apppointed pain in the ass: I teach at the college-level in an urban area, and I see many young pregnant women in my class... I dole out a little health advice in addition to my lit.!

Recently, I talked with an acquaintance who is carrying twins due to IVF. She told me that -now that she's made it past her first trimester- she had a great chance of carrying to term...

I get it, that no one wants to be the "wet blanket" or frighten a soon-to-be-mom to death, but--!!

Anonymous said...

I'm so there with the education issue, and the fact that many OBs just aren't doing their jobs in that area. A friend of mine called me at 23 weeks, while on the way to her OB because she thought she had lost her mucous plug and she was having some pain. Her OB checked the baby's HR and checked her cervix and found it closed, so she sent her on her way. This friend is high risk for having an incompetent cervix (as discussed by her OB) because of surgeries she had years ago. Yet, this is what the OB does when she comes in. No US to check cervical length, no ffn, no education, no real instructions. Just "you're fine - it was nothing."

Then there is the rising number of late preterm births, rising scheduled elective c-sections, etc.

So frustrating.

Anonymous said...

Helen Harrison writes:

Here's an abstract that could be put into simpler language and given out to all mothers at risk for preterm delivery.

(And while the brain is the organ singled out here, the same issue of permanently derailed development apply to most, if not all, other vital organs -- lungs, kidneys, etc.)

Brain imaging studies of the anatomical and functional consequences of preterm birth for human brain development.
Annals of the New York Academy of Science 2003 Dec; 1008:219-37.

Bradley S. Peterson
Columbia College of Physicians and Surgeons and the New York State Psychiatric Institute, Unit 74, 1051 Riverside Drive, NY 10032

"Premature birth can have devastating effects on brain development and long-term functional outcome. Rates of psychiatric illness and learning difficulties are high, and intelligence on average is lower than population means. Brain imaging studies of infants born prematurely have demonstrated reduced volumes of parietal and sensorimotor cortical gray matter regions. Studies of school-aged children have demonstrated reduced volumes of these same regions, as well as in temporal and premotor regions, in both gray and white matter. The degrees of these anatomical abnormalities have been shown to correlate with cognitive outcome and with the degree of fetal immaturity at birth.

Functional imaging studies have shown that these anatomical abnormalities are associated with severe disturbances in the organization and use of neural systems subserving language...

Increasing evidence suggests that a host of mediators for hypoxic-ischemic insults likely contribute to the disturbances in brain development in preterm infants including increased apoptosis, free-radical formation, glutamatergic excitotoxicity, and alterations in the expression of a large number of genes that regulate brain maturation, particularly those involved in the development of postsynaptic neurons and stabilization of synapses.

The collaboration of both basic neuroscientists and clinical researchers is needed to understand how normal brain development is derailed by preterm birth...

These(and more)adverse changes are from prematurity per se. Add to this the consequences of "cerebral hemodynamic changes" from intensive care-giving described above. And then there is the damage from steroids, oxygen, infection, ventilator treatment, surgery, anesthesia, lack of anesthesia, pain, antibiotics, medication toxicities, nutritional derangements, etc.,etc.

If parents were told all this, I doubt that so many would want to commit their extremely preterm infants to the "preemie experiment."


Kristie McNealy said...

On top of the above things mentioned by Helen, I also ran across a press release today about a study showing that young kids who undergo general anesthesia have an increased risk of behavioral and developmental disorders.

This study looked at routine hernia repairs, not really sick kids. I haven;t tracked the study down yet, but here is a link to a news article:

Now, if general anesthesia impacts the brains of average kids, what about preemies whose brains have lost that critical developmental time in the womb?

Sheila said...

Hi Kristie,

This is one of the truly, truly great conundrum of NICU medicine. We know that opiates and anesthesia have a negative impact on cognitive outcomes in preemies, but ... we also know that untreated pain also creates the same negative impact. So ... at the moment, it seems rational to err on the side of human compassion and appropriately treat preemies for painful procedures and conditions ... but it does make the compassion a bit harder to swallow when you know you are adding insult to injury brain-wise. I can tell you as a parent whose child was not given significant pain control for difficult things (chest tubes, intubation etc) that many preemies of that era all seem to have paradoxical responses to painful stimuli. I'm well past childbearing but if I were to be an invited guest into a g*d forbid NICU of a grandchild, I would be a vociferous advocate for pain control and developmental care. Just because it seems the only human way to treat a half baked fetal human.


Anonymous said...

Helen Harrison writes:

I just had an article published in the October issue of Seminars in Fetal and Neonatal Medicine (2008) 13,319-334, entitled "The offer they can't refuse: parents and perinatal treatment decisions."

Here is one of the paragraphs:

"The suffering of fetal infants during resuscitation and months of treatment continues to be a source of 'moral distress.' These are infants whose skin is so gelatinous it pulls off to the touch, infants for whom the most basic maneuvers of care inflict injury. Provision of analgesia and anesthesia to these infants is difficult and dangerous, leaving a medical and ethical dilemma in which both the pain of treatment and the use of pain-relieving medications can be permanently damaging."


I would be glad to type out the five references for this paragraph -- articles by Drs. Anand, Grunau, Whitfield, etc. -- if anyone is interested.

23wktwinsmommy said...

I think reading the effects of premature birth (especially extreme premature birth) could potentially cause people not to consent to treatment which will impact their brains...(although prematurity itself alters the brain, right?)
It sounds really bad on paper, and sometimes I forget just how *bad* it is because life is much more than simply tolerable with my twin 23 weekers who ARE impacted, and will be forever, by their extreme preterm birth.
After two years of contemplating this ethical dilemma, I have accepted the fact that I do not have the answers. What I can say is that at two years old my children have a wonderful quality of life. Could things get harder as the years pass? Probably. Do I believe that it will cause them to have a poor quality of life, no. They are not severely disabled and maybe this changes my perspective.
I think accepting the fact that your child will have special needs if born at 23 weeks (which I knew) makes acceptance so much easier.
Does this mean I feel good about the current outcomes? No. I really hope they get much, much better. I hope that more NICUs change and become family centered, gving more parents more information and the ability to make decisions that fit for their family, and for all to practice cluster care, and encourage parents NOT to talk, touch, or hold their ELBW infants in the beginning weeks. I saw their sats drop when they were "messed with." No study had to show me the lights, noise, pain, etc effects brain development. They are exposed to the outside world when they should be in the comfort of the womb.
And I do wish it were different. I wish my children's brains were like their full term peers. However, their lives are not filled with physical pain or intense suffering and for that I'm extremely grateful. We had the prior knowledge that our children would be effected by their early gestation and routine care, and I am 100% satisfied with our decision to initiate care and continue it. Everyone who knows them feels the same way.
I think the fact that many families feel this way about their former preemie gives some anecdotal evidence that even with studies showing the brain differences in preemies, there are families who feel their children's lives are meaningful and are happy with the decision to initiate care.
I think the key is to make sure families know that below 26 weeks there is a VERY strong likelihood that they will have a child with many medical and special needs. We were prepared for this and talked about how this would effect us as a couple and family. Because of this mental and emotional preparation, we are much better parents than we would have been if we thought they would be "caught up" by now.
I think it is important for the medical community and society to understand the stark differences between the full term child and the micro preemie. There are differences that I can see even in our daughter who is close to typical at age 2.
Blaming a parent or a child for particular behaviors needs to stop. And this can only be accomplished by an understanding and acceptance that a child/adult is *usually* impacted by their extreme preterm birth. Because of this, these studies are important and need to reach parents, the medical community, and society at large.
And one more thing because this is long already, while I believe giving parents statistical information about particular gestations is important, I'd hope that parents would seek out anecdotal evidence from families with former preemies. Because just reading about what our kids can face DOES NOT give a true picture of what our lives are really like...for better or worse.

Anonymous said...

Helen Harrison writes to 23 week twins' mommy:

When my son was two I had no idea of what his life (or ours) would be like as he grew. Looking back, the first two years were not all *that* bad in terms of Ed's health, at least once he was out of the NICU.

Cerebral palsy is easy to manage when a child is young, light, and portable, or when the child is mobile with some help. This changes as that child grows, gains weight, as muscles contract, bones and joints dislocate and the relentless pain sets in.

Then surgeries/botox treatments come -- one after another, with all their own special agonies and complications.

The brain abnormalities described in a previous post are also lurking, ready to explode -- a bit like time bombs. As the brain matures and undergoes changes into adolescence, adulthood and beyond the long-term effects manifest themselves --for just one example, preemies are thought to develop Alzheimer's *much* earlier than the rest of us.

By adolescence, the early brain disturbances appear to worsen considerably, causing significant psychiatric issues, such as bi-polar disorder, OCD, severe depressions and anxiety, schizophrenia/autism.

Vision deteriorates; kidney deficits start to manifest themselves as hypertension,diabetes,and early heart disease.

Lung issues worsen, leading to chronic, debilitating, and potentially lethal respiratory problems.

Immune issues may start to kick in, if they haven't already.

Feeding and digestive problems manifest in new, sometimes quite gruesome, ways.

And then there are adhesions from NICU (and subsequent) surgeries, leading to further adhesions, leading to further surgeries.

There's so much more... but two years into it, I personally had no idea how complicated and painful it could all become. I hope you are spared all of this, but many, many of us have seen the other shoe(s) drop over and over.

That being said, you say you were informed of all this and allowed to make decisions, and that you are currently happy with your decisions. I wish you all the best.

Stay strong,

Helen (32 years into it, now)

Anonymous said...

Helen Harrison adds:

Oh, before I forget, a bit of advice to new preemie parents: Dental Insurance!!!!

If you don't have any for your preemies, get it now!!!

I'll post later about our son's $10,000 cavity.


Kristie McNealy said...


I totally, 100% agree that pain needs to be managed in the NICU. My own daughter has issues with hypersensitivity.

It's just interesting to see what we're learning as time goes on about the impact of our own actions in the NICU and in other forms of medical care.

There are instances in medicine where parents are urged to hurry up and fix things surgically while the child can't remember, etc. Certain urology procedures come to mind. There are also a lot of ENT procedures that are helpful, yet perhaps not totally necessary. It would be nice as a parent to hear this anesthesia study data before having consented to PE tubes, CT scans and bronchoscopies under general anesthesia. Especially when the tests weren't expected to find anything, but rather to rule things out.

There are also plenty of times when parents want things done under general anesthesia or sedation, when it isn't a matter of necessity, but rather convenience or anxiety. If they knew they might be risking their child's developing brain, they might think differently!


23wktwinsmommy said...


I understand what you are saying, and because I am very aware of the things that could come, I do feel very thankful for the diagnoses that S&E do have, or are suspected to have.
For example, if E does have CP (still not dxed) it is truly hypotonic. At 2 years old he still has no spasticity whatsoever. I have been told that at this point, he will not develop stiffness, contractures, or need botox. This is why he doesn't have a dx and all professionals feel we are still dealing with low tone (transient dystonia)...(I believe it IS neurological in nature but am grateful that he is not tight and in pain...just weak in the trunk.)
We also don't have digestive issues...never a feeding issue, no NEC in NICU, no constipation, nothing....wonderful eaters...we are very grateful for this.
Neither had hydrocephalus and no need for a shunt. I understand shunt infections and shunt revisions are a source of great pain and it is devastating to think of children having to undergo all that pain.
As for autism, because of the dramatic increase in those being dxed, the signs are being noticed more by parents and professionals at an early age. I know children who are being dxed with PDD-NOS at 18 months old. I'm not saying we are in the clear at 2, but the signs of even Aspergers can be seen very early, and because we have so many professionals involved, and there does appear to be a link to prematurity, this is always being looked at in every evaluation, and so far socially, there are no red flags.
Again, I fully expect to continue to deal with respiratory issues and IEPs for years to come. Who knows if either will live independently, as 2 is clearly way too early to say.
We did not walk away unscathed, however, I do know my perspective on care is related to how my children are doing and I am able to appreciate why others feel their children's suffering is too great.
Because I saw this with my own eyes while my son suffered in the NICU, I do grieve for those who still witness their children suffer daily.
I wish there was a way to improve outcomes, and to replicate those who are not suffering. Even more, I wish there was more research being done to prevent infection and other causes of preterm labor in the first place.
Let's spend more time and money on THAT research!!!

23wktwinsmommy said...

And one more thing. The advice I'd give to parents with newborn under 26 weeks is this. Almost definitively, your child will be different to some degree...whether it be medically, developmentally, or both. Read these studies, familiarize yourself with warning signs, available therapies, support groups, etc. Try to prepare yourself for what could come, and don't live in denial. But I'd suggest NOT living your life waiting for the other shoe to drop. Your child deserves much more than that, and so do you. Enjoy life with your child. After all, they are already here and there is no turning back time or second-guessing yourself.

Anonymous said...

Helen Harrison responding to 23 wktwinsmommy who wrote:

"Even more, I wish there was more research being done to prevent infection and other causes of preterm labor in the first place.
Let's spend more time and money on THAT research!!!"

THAT research has been going on for decades, with *huge* amounts of time and money devoted to it...and yet the prematurity rate is increasing.

The one piece of "actionable" information that has, so far, emerged from all this research is that, in many cases, infection/preterm delivery can be predicted as early as 16 weeks (but, as of yet, not prevented). The only way this info can be used, at present, is to end the threatened pregnancy, or to give comfort care at delivery.


Kyrsten said...


*How* can infection be determined at 16 weeks?!

Please, if you have any, give me some info. to pass on!

I'm at 31 weeks and holding-- but all throughout this preg. I've had no different monitoring than I had last time (which was, "you're fine" at 25/5, PROM at 26/1).


...and I'm almost jealous, 23weekstwinsmommy- I wish we'd had some kind of education. Hindsight is 20/20, and I'm trying not to feel guilty (another frequent topic on here!) for feeling like I 'dropped the ball' with educating myself.

I miss Jonathan.

Anonymous said...

Helen Harrison to Kyrsten:

Amniocentesis shows certain types of cytokines (proteins that accompany infection) in the amniotic fluid as early as the
16th week of pregnancy.

Those pregnancies destined to end early usually test positive. This test can also be used to help detect infection in cases of PTL/PROM.

A small number of very preterm deliveries do not involve infection, but the vast majority of those ending before 28 to 32 weeks are related to (often subclinical) infection. the infection can originate anywhere in the body -- including from gum disease!


Kyrsten said...

Thank you-- and I know this is somewhat unrelated, so thank you for bearing with me.

I was told my pPROM was unexplained, and likely due to a multiple pregnancy [among other complications of prematurity, Jonathan's cause of death was multiple organ failure due to sepsis (occurring in less than 1% of babies born with infection)].

BUT, at no time in *this* pregnancy --and I've chosen well-recommended doctors, and pushed for better monitoring-- was I told anything different would be done in the way of checking for infection.

Amnio was discouraged because of the risk of PROM.

I'm sorry again, because this is old history now, but it goes back again to being informed.

Kate K. said...

Regarding 23wktwinsmommy's comment that: "Read these studies, familiarize yourself with warning signs, available therapies, support groups, etc. Try to prepare yourself for what could come, and don't live in denial. But I'd suggest NOT living your life waiting for the other shoe to drop. Your child deserves much more than that, and so do you. Enjoy life with your child. After all, they are already here and there is no turning back time or second-guessing yourself."

Well said, 23wktwinsmommy. I confess, however, that I find it difficult not waiting for the other shoe to drop. My son was born at 25 weeks (1 lb 3.65 ozs). Today, he is 14.5 months adjusted and looks/acts appropriately, if not advanced, for his adjusted age.

I had no idea that babies could really survive before the end of the second trimester prior to my son's birth. We were told that there could be complications and that it was likely among the many things that could go wrong, a best case scenario was having ADD at least. The data for my child suggests that his chances of being "normal" are 20%. Even if we had been presented with the statistics ahead of time, it wouldn't have altered our choice in how his care was handled.

While I know that rationally there's really no point in waiting for the shoe to drop (what will be will be), it is hard not to expect that something is going to go wrong, especially when he really does look so fabulous at the moment. I couldn't imagine a more loving, sweet child than the one I have been blessed with. Any advice that anyone can offer on how to not expect the shoe to drop would be most welcome. I suspect that the "waiting for the shoe to drop" syndrome is in part caused by having some many ups and downs on the NICU roller coaster. Every time one thinks that things are going well, wham! Reality strikes. Sadly, I almost feel like its bad luck to be optimistic...although I should note that I absolutely do enjoy my son and highly doubt that he has any clue about how much I worry about him.

Anonymous said...

Helen Harrison to Kyrsten:

Amniocentesis for detection of infection is not a standard part of prenatal care in this country. I've heard it is in South Korea, but otherwise I don't think that it is routinely being done yet, though I've heard about it at medical conferences.

Twin pregnancies have slightly different risk issues from singleton gestations, and infection may not have been behind the pPROM in your previous pregnancy.

Sepsis is a devastating complication and carries a huge additional risk of severe brain damage, if the baby survives. Previous infection is not necessary for it to occur. The severe immune impairment of preemies makes them particularly vulnerable to almost any organism around. My son had it and survived with severe multiple disabilities.

I hope all goes well with your current pregnancy and, if this is a singleton pregnancy, I don't believe you need to worry about being at higher risk. Have you talked about this with your OB?

BTW, I just heard from a friend who is a former 27-weeker male twin. He is now a university researcher studying lung function in adults who had BPD as neonates. He is also an excellent athlete. This kind of terrific outcome is, unfortunately, rare, but it *does* happen.

I think 23wktwinsmommy is right to urge us all to enjoy the moment with our children. Easier said than done, I know, but with practice...

I found that aerobic exercise helped me quell the worst of my worrying. Also wine with dinner, a sense of humor, and a sympathetic family.

I also feel it is important for those of us who have "been there," to share our knowledge and speak the truth. I have to assume that anyone who is reading this blog is "ready" to read it.

Your son, born at 28 weeks gestation, has a fair chance of a "normal" outcome -- about a third in this gestational age range normal in adolescence with no obvious prematurity-related impairments.

This doesn't mean your son will be totallhy unaffected by prematurity, but it does not rule out an independent life -- and in some cases an exceptionally successful life.

Good luck!


Nancy said...

When Caitlyn was younger, around the 2-3 years old range, I had mentioned to a colleague of mine that I was just waiting for the other shoe to drop. He said the best thing anyone could have ever said to me.

"There are no shoes left to drop. They dropped when you delivered her 15 weeks early. Go home and enjoy your baby now.

Not that he was insinuating that nothing could ever go wrong. But he helped me to realize that what we went through and what Caitlyn went through were some pretty tough times (and we had smooth sailing in the NICU), but I needed to focus on what she could do in the moment. And enjoy her doing those things. And like I have said before, and I truly believe this, the things that could go wrong with Caitlyn when she is older could have certainly happened had she been born full term. No one can tell me that if she has ADD or LD or certain psychological issues when she is older that it is without question due to her prematurity. There is no definitive test to tell me that these things are a direct result of her birth. Does it increase the chances? Sure, but there is no way to tell whether or not that would have been her outcome even under the most ideal of birthing situations. We see those kids all around us, everyday. Perfect pregnancy, perfect birth, wham! ADHD when they are 9 years old. No one can say it's because of one thing or another, hell, there are still people out there who disagree with it even being a "true" diagnosis.

That's not to dismiss the findings that have been stated here at all. But it's my theory and it's what keeps me from sitting around waiting for the other shoe to drop.

23wktwinsmommy said...

How do we live life *not* waiting for the other shoe to drop?
For me it takes a conscious effort...sometimes daily, to remind myself that I don't have that much control in this whole thing. Not having control makes me nervous. But I try to focus on acceptance.

There are hundreds of things I worry about. There are nights I cry myself to sleep (much more rare than the first year). But the worry is there.
But what I try to do is find things to do that are "normal."
We go swimming as a family one day a's great exercise for the kids and fun and relaxing for hubby and I to enjoy the heated pool and the kid's laughs and smiles. We also do family things every Saturday and/or Sunday. Go to a family farm and pick apples, go shopping, go for walks, etc.
We also have a wonderful support system, who help watch the twins, enabling me to work 30 hours a week and for hubby to work and train for his boxing career (I'm sure beating the heck out of a punching bag helps relieve stress.) We have just worked it out with my parents so that I can pursue my dream of law school, which has been put off for 2 years because of the instability of the twin's health. Because they are doing well without oxygen, and getting through colds without hospitalizations, I feel good about going to law school part time nights next fall! YAY!!!

We have come to the understanding that life is tougher for us because of the twin's medical and developmental needs, but we try to live life as "normally" as possible, and do what we can to take care of ourselves, our relationship with each other, and our family. To me, it's easier because we truly value our twins lives because we went through the "4 month fight" to get them home as healthy as possible.
Sometimes life seems so fun and normal, when I get a realization that it's not completely "typical", it hurts a little more. Like when I realize I probably won't be able to send them to the private school I went to because it is not handicap accessible (when, if ever, will E walk without his walker?), and they don't have the resources onsite that public schools have (special ed, PT, OT, etc) Those things make me sad, but I try to make a plan. I say they will be tested this summer. We can see where they are. We'll do pre-K for 2 years in public school and reevaluate. Maybe they'll always be in special-ed and that's just something we have to accept. Acceptance and grieving can go hand in hand.
When I find myself ruminating, I try to talk to someone about it who is sympathetic.
I also remind myself that we are so blessed to have both our children and remind myself to be thankful for the things they ARE doing and try to work on improving the things they are struggling with.
It's never THAT easy, but those are some things we do to help with stress and helping to not worry about the other shoe.
I also admit it makes it easier because S&E are so happy and social. Because of the reciprocal desire to be with each other, it does make it easier. They are excellent sleepers (sleep until 8:30am and go to sleep by 8:30 pm), SLEEP is a must!!!, they are very attached to us, not fussy, and they enjoy being out and about. These are things I am thankful for and hope continues. It would be harder if not for these things.

Dreaming again said...

hey girl, I need your email address in order to give you invite to my blog...

ThePreemie Experiment said...

Helen, thank you for posting the research. I'm trying to figure out a way to post all of it so it can be easily found when someone is searching. If anyone has any ideas, please email me.

One of my biggest issues is the fact that honest and clear info is not easily available when people need it.

ThePreemie Experiment said...

Kristie, thank you for the link. I'm going to try to track down a few other sources for the study and then post it.

I find it very interesting, especially since many of our kiddos have procedures that require general anesthesia.

Speaking of hernias (the procedure mentioned in the study)... Paige had bilateral hernia repair when she was 2. I never knew that preemies were at a higher risk. As a matter of fact, neither did her doc. We noticed the lumps but they would disappear when we got to the doc. He kept on saying, "they can't be hernias. She's a girl and very young." I finally found quite a bit of info on hernias and preemies and brought it to his office. It just so happens that her body cooperated and they were sticking out when we got there. We were rushed to a surgery consult (they were huge) and they were fixed a few days later.

ThePreemie Experiment said...

23wktwinsmommy wrote: "they are very attached to us, not fussy, and they enjoy being out and about. These are things I am thankful for and hope continues. It would be harder if not for these things."

It is harder when your child is not happy. It's painful,as a parent, to not be able to help your child enjoy life.

When a typical child is sad, you step in and give lots of hugs. Hugs are magic. They fix so much.

But, what happens when you can't hug it all away?

It's easier for me to talk about it now that Paige is on medicine because I can see the difference. I can't let my mind go back to what we dealt with before meds. No amount of hugs could fix it.

My heart aches when I read emails and postings on the preemie groups where people are begging for help because their child has severe meltdowns. It brings back such memories.

ThePreemie Experiment said...

I want to mention something about "waiting for the other shoe to drop".

I think it's easier to let go of the worry and wonder about the future when your child is doing well. During periods of Paige's life when she was doing really well, and doc appointments were at a minimum, it was easy to go on with our day to day activities and not think twice about what *could* happen.

But, once you've experienced a major life changing event with your child, it becomes harder to not worry about the future.

When Paige was still little (under 4) someone (on a support group) mentioned epilepsy. I naively thought that she was not at a higher risk because she didn't have seizures as an infant. I was floored when I started researching epilepsy in preemies and found that the average age for preemies to have their first seizure was between the ages of 4 and 6. I was stuck in that realm of wanting to learn about what could happen and I really think it was because I didn't want to be blindsided when something happened.

Jump ahead a few weeks. I was pushing Paige on a swing and she had a seizure. She was 3 weeks away from age 4. I was not blindsided. I knew what I needed to know order to convince the doctor that, although she "looks good", it is still possible that she could have something going on. Was I sad, angry, scared?? Absolutely. But I was prepared.

She has been off meds for a few years now. Despite EVERY EEG showing continuous spikes, we weren't seeing any seizures. 2 neuro's agreed with us and we discontinued meds.

When we first took her off meds, I was waiting for the other shoe to drop. It didn't, and I relaxed.

Until this Thursday.

Paige was sitting at the kitchen table eating breakfast. I was talking to her while doing the dishes. I turned around to rinse a dish and as I turned back around to put it in the dishwasher I watched Paige fall off of her chair and on to the floor. She had a look of confusion on her face. She sat up and said something like, "how did that happen?" and went on to clean up her spilled oatmeal. I swear I stopped breathing. So much was running through my head. (Was that a seizure? did she hit her head? Ok, I refuse to worry about this as long as she acts normal the rest of the day.)

2 minutes later she was on the couch, extremely tired. I wanted to cry. I knew what the tiredness meant. Paige is NEVER tired. Remember, this is the child that needs meds to fall asleep. I covered her up, went in to the bedroom and cried.

She rested for about an hour and then seemed back to normal, which is exactly how she used to act after a seizure. She's been tired during the day since then, which means she isn't sleeping well. Which means that there is a possibility that her nighttime seizures are back. I know this may very well pass and we won't see any episodes for a long time, if ever. But, I also know that this could be just the beginning.

The thump of that shoe falling is deafening.

liz.mccarthy said...

Stacy, I just read your "comment" about Paiges' seizures. I'm so sorry sweetie, keep us posted.

You, along with everyone else who has posted here, continue to make me realize that I'm not 'wrong' for having my gut feelings that my daughter does have issues, I'm so tired of all the comments: "oh, she looks so great, she was such a small baby, she's come so far..." ugggghhh

ThePreemie Experiment said...

Thanks Liz. I'm still crossing my fingers that it was either not a seizure or it was an isolated incident. I'm trying very hard to ignore what my gut is telling me. I think I've written about how I stick my head in the sand from time to time. I have it firmly planted there now. lol

As for your "gut" feelings about your sweetie pie... the place in time you are at right now is a rough one. She is at the age when the things that she does (that have set off your gut) can no longer be dismissed with "oh that's normal for a toddler... she'll grow out of it" and she is too young to really assess what is going on. What is really hard to do right now is to wait. She may come out of this with less issues that you are thinking or it may be exactly what you are thinking. I've been where you are Liz and I think of you often. Ages 3 and 4 are just so hard. And, now that you have a little one who will be typical, you will find yourself really noticing differences. I know I sure do.

Hugs Liz.

Sheila said...

Honestly, I've never really understood why "other people" and MD's want to caution against a "waiting for another shoe to drop mentality". It's as though they've suddenly become some primative tribe that feels that 'thoughts will anger the G*ds and the crops will fail'. The fact is once your life has crash landed in the NICU, it is MUCH MORE helpful to view your life as waking up in an Oz like place where there are occassional, but regular shoe showers. It has really helped me to live a cheerful, calm, productive life between shoe showers because I have the mental equivalent of a hard hat and fire turnouts that I can don at the first hint of a sandal on the roof. I just put on the mentally protective clothing and go about righting anything knocked over by the shoes and cleaning up any mess.


Anonymous said...

Well put, Sheila! My sentiments exactly.

ready to eat, drink, and be merry, but always with the "hazmat" suit close at hand

23wktwinsmommy said...

*IMO* There's a difference between recognizing your life has irreversibly changed and living every day in worry, fear, and misery. Wondering if something terrible is going to happen in the future with your child day in and day out will cause you to not enjoy the day to day with your child which is a disservice to your child and to yourself.
It's fine to be aware of the possibilities, but ruminating about possible devastating future events is harmful to your psyche and your child's.
Being in a constant state of fear, and not enjoying your child for who he/she is very unfair.
Again, IMO

Sheila said...

I won't speak for Helen, but what I "think" she was saying and what I definitely was saying is ... be happy, but know that shoes are coming ... so create whatever sort of protective "mindset gear" you need to put down the Merlot and pick up the Merck manual at a moments notice :-)


Anonymous said...

Helen Harrison says:

You got it right again, Sheila.

Merlot and Merck manual, always at hand.

(as happily -- but also as warily --as possible),


terri w/2 said...

Oh Sheila - loved the "shoe showers" comment, found myself LOL.
If THAT isn't the truth!

My girls are now 22, and I have to say that the shoe showers continue to fall with some regularity. Does it ever end in preemieland? Don't think so. .

PE - I'm so sorry that Paige is appearing to have seizures again. I think of all the issues between my girls, seizures are the worst. .they are unpredictable, hard to control (in our case anyway), and very very sneaky. E went for 4 years (from age 2 to age 6) without seizures and then abruptly we woke up one morning to find her in a status epilepticus - ambulance to the house, 2 day stay for accompanying aspiration pneumonia. Her seizures have never been well-controlled, as she's been on every possible seizure med made. We travel with diastat always (rectal valium) as her seizures do not stop until we intervene. It used to be always a trip to the ER for IV therapy, however the diastat works great (not that this would be for Paige, as it sounds like hers are not status type seizures.) Hopefully you'll find a med that works well and not too many side effects.

About those pesky "cerebral hemodynamic changes during intensive care of the preterm infant". . .grrrr.